Saturday, June 16, 2012

Boy Scout troop 621's PSA about Juvenile Arthritis

A dear friend of ours sent me this video. Boy Scout troop 621 put together this PSA about juvenile arthritis. In order to get credit for the video, they are trying to get it posted on different blogs or websites. Please SHARE!!!

Friday, June 1, 2012


May has been a crazy month for us. We had a several medical appointments between the kids and I. Matthew had his tube removed, Jordan had her normal rheumy stuff and an eye exam. The eye exam didn't go as well as we hoped. Jordan has cells in her right eye. She's at a 1+ so it needs to be treated. We go back on 6/22 to see how things are. If she's clear, we can finish the drop taper. If not, we'll need to make some changes to her systemic meds.

One of the newer meds Jordan is on is called plaquenil. This is a very old med that was originally used to treat malaria. Overall, plaquenil is a pretty safe med. Some people don't tolerate it well and have stomach issues. Jordan and I have had no problems with it at all. Plaquenil has been wonderful for me as far as my rashes go. And for Jordan, it seems to have given her body that extra boost to kick her JA. Yes, you read that right. JORDAN HAS NO VISIBLE SIGNS OF JA. Her joints look perfect. But, there is that pesky uveitis hanging around. Her inflammation labs came back elevated but that could be because of the uveitis. The eye flare isn't anything major so we aren't sure if that is what is causing her labs to be elevated. They aren't super high but after last months labs being close to normal, this isn't good.

So, for now nothing is changing. When we go back in June to see Dr. G, if her eye/s are still flaring, something will be changing. Dr. G did say that Jordan has gained weight, which in itself is HUGE, so just increasing her CellCept might quiet her eyes.

Today we will be heading back to the opth for a vision check. I take the kids every year for a vision screening but because J is now on plaquenil, she must have her vision checked twice a year. One of the rare side effects from plaq is hydroxychloroquine (plaquenil) retinopathy. I'm not worried about it, but J will now be getting her eyes checked twice a year, just like me.

Overall Jordan is doing really well. She says she feels the best she's felt in a very long time. Her energy is back up, she's not asking for pain meds or asking to soak in the tub. Her swelling is gone and we can start weaning her off of pred. It's going to be a slow wean since I had issues last year but I'm hoping she will be off by time school starts again in August.

These are a few pics from the walk in LA on May 19. Jordan was interviewed TWICE, once by the National Arthritis Foundation and once by our local CBS station.

This is our friend Jena. A year ago Jena started a local support group for people with lupus, RA and fibro. Our family instantly bonded with Jena. She's been a blessing to me but I am most thankful for the bond she has with Jordan. I think seeing what Jena has accomplished with RA and lupus has helped Jordan realize that even if you are sick, you can still change the world.